The Burden of Cold Agglutinin Disease on Patients’ Daily Life: an Online Survey of 50 American Patients (Preprint)

2021 ◽  
Author(s):  
Florence Joly ◽  
Lisa Anne Schmitt ◽  
Patricia Ann McGee Watson ◽  
Emilie Pain ◽  
Damien Testa
Keyword(s):  
Social Life ◽  
Online Survey ◽  
Daily Life ◽  
Well Being ◽  
Daily Basis ◽  
Cold Agglutinin ◽  
Cold Agglutinin Disease ◽  
Household Finances ◽  
Experienced Fatigue ◽  
Patients Perspective

BACKGROUND Cold agglutinin disease (CAD) is a rare and poorly understood disorder affecting 15% of patients with autoimmune hemolytic anemia. Few studies have assessed CAD symptoms and their impact on daily life, and these did not address the patients’ perspective. OBJECTIVE The aim of this research is to increase the knowledge on CAD through a patient-centric survey and to gain a better understanding of the burden of this disease. METHODS We conducted an internet-based survey in September 2020 among American patients registered on the CAD Unraveled website and members from the Cold Agglutinin Disease Foundation. RESULTS Fifty respondents were included in the study. Ninety percent of patients reported having experienced fatigue. Fatigue was mainly reported on a daily basis, and almost a third said it was constant through the day. It has also been shown that CAD had a great impact on physical well-being, emotional well-being, social life, and patients’ household finances. The disease varies over time, with or without symptoms. Eighty-eight percent of patients reported previous episodes of increased intensity/sensitivity of their CAD symptoms, with a mean number of episodes reported of 4.5 during the past year. More than half of the patients considered their disease as moderate or severe, and over 40% of the study group reported that their symptoms had worsened since the time of diagnosis. CONCLUSIONS Our study has raised new data on CAD symptoms, in particular on the importance and type of fatigue, and the fluctuation of CAD symptoms.

PRO55 Impact of Cold Agglutinin Disease and Its Related Fatigue on Patients' Daily Life: An Online Survey Among 50 US Patients

2021 ◽  
Vol 24 ◽  
pp. S207
Author(s):  
F. Joly ◽  
L.A. Schmitt ◽  
P.A. McGee Watson ◽  
E. Pain ◽  
D. Testa
Keyword(s):  
Online Survey ◽  
Daily Life ◽  
Cold Agglutinin ◽  
Cold Agglutinin Disease

scholarly journals Perceived efficacy of COVID-19 restrictions, reactions and their impact on mental health during the early phase of the outbreak in six countries

2020 ◽  
Author(s):  
Martin Jensen Mækelæ ◽  
Niv Reggev ◽  
Natalia Bezerra Dutra ◽  
Ricardo M. Tamayo ◽  
Reinaldo A. Silva-Sobrinho ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Life ◽  
Early Phase ◽  
Online Survey ◽  
Daily Life ◽  
Well Being ◽  
Effective School ◽  
Policy Makers ◽  
School Closings ◽  
Life Habits

The COVID-19 pandemic forced millions of people to drastically change their social life habits as governments employed harsh restrictions to reduce the spread of the virus. Although beneficial to physical health, the perception of physical distancing and related countermeasures could impact mental health. In a pre-registered online survey, we assessed how effective a range of countermeasures were perceived, how severely they affected daily life, general distress and paranoia during the early phase of the outbreak in Brazil, Colombia, Germany, Israel, Norway and US. Most of our over 2000 respondents rated the countermeasures as effective. School closings were perceived as having the strongest effect on daily life. Participants who believed their country reacted too mildly perceived the risk of contracting Sars-CoV-2 to be higher, were more worried and expressed reduced beliefs in the ability to control the outbreak. Relatedly, dissatisfaction with governmental actions corresponded with increased distress levels. Together, we found that satisfaction with one’s governmental actions and fear appraisal play an important role in assessing the efficacy of countermeasures during the pandemic and their related psychological outcomes. These findings inform policy-makers on the psychological factors that strengthen resilience and foster the well-being of citizens in times of global crisis.

scholarly journals Perceived efficacy of COVID-19 restrictions, reactions and their impact on mental health during the early phase of the outbreak in six countries

2020 ◽  
Vol 7 (8) ◽  
pp. 200644 ◽  
Author(s):  
Martin Jensen Mækelæ ◽  
Niv Reggev ◽  
Natalia Dutra ◽  
Ricardo M. Tamayo ◽  
Reinaldo A. Silva-Sobrinho ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Life ◽  
Early Phase ◽  
Online Survey ◽  
Daily Life ◽  
Well Being ◽  
Effective School ◽  
Policy Makers ◽  
School Closings ◽  
Life Habits

The COVID-19 pandemic forced millions of people to drastically change their social life habits as governments employed harsh restrictions to reduce the spread of the virus. Although beneficial to physical health, the perception of physical distancing and related restrictions could impact mental health. In a pre-registered online survey, we assessed how effective a range of restrictions were perceived, how severely they affected daily life, general distress and paranoia during the early phase of the outbreak in Brazil, Colombia, Germany, Israel, Norway and USA. Most of our over 2000 respondents rated the restrictions as effective. School closings were perceived as having the strongest effect on daily life. Participants who believed their country reacted too mildly perceived the risk of contracting SARS-CoV-2 to be higher, were more worried and expressed reduced beliefs in the ability to control the outbreak. Relatedly, dissatisfaction with governmental reactions corresponded with increased distress levels. Together, we found that satisfaction with one's governmental reactions and fear appraisal play an important role in assessing the efficacy of restrictions during the pandemic and their related psychological outcomes. These findings inform policy-makers on the psychological factors that strengthen resilience and foster the well-being of citizens in times of global crisis.

scholarly journals AB1336-HPR NON-PHARMACOLOGIC TOPICS RELEVANT FOR CLINICAL RESEARCH IN RHEUMATIC DISEASES: THE PATIENT PERSPECTIVE

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1956.2-1956
Author(s):  
F. Ingegnoli ◽  
T. Schioppo ◽  
T. Ubiali ◽  
S. Ostuzzi ◽  
M. Buoli ◽  
...  
Keyword(s):  
Physical Activity ◽  
Clinical Research ◽  
Environmental Pollution ◽  
Rheumatic Diseases ◽  
Social Life ◽  
Eating Habits ◽  
Well Being ◽  
Psychological Well Being ◽  
Work Activity ◽  
Patients Perspective

Background:The research approach on Rheumatic diseases (RDs) is challenging and patient involvement as partners in medical research is an emerging force to obtain relevant information and to add unique skills, values and experiences to research. Despite growing interest in non-pharmacologic aspects of clinical research in RDs, the patients’ perspective is currently poorly explored.Objectives:To identify and rank the priorities for clinical research according to patients’ perspective.Methods:A structured face-to-face meeting between physicians and a patient representative was convened to list the non-pharmacologic topics relevant to RD patients. A cross-sectional no-profit on-line anonymous survey was devised to evaluate opinions of RD patients. They were asked to rate the following topics: food/nutrition, air pollution, smoking, work activity, social participation, physical activity, emotional well-being/stress, alternative medicine, and patient-physician relationship. Moreover, patients were asked to explain for which reason a topic was considered important (disease prevention, halting disease progression, symptoms control and disease cure). The survey was disseminated by ALOMAR (Lombard Association for Rheumatic Diseases) between June and October 2019.Results:200 rheumatic patients completed the survey: 130 inflammatory arthritis, 50 connective tissue diseases/vasculitis, and 20 among osteoarthritis, gout, condrocalcinosis, polymyalgia and primary fibromyalgia. Respondents were 178 female with median age of 50 years and median disease duration of 7 years. Among the nine topics identified, the one most rated by patients was the doctor-patient relationship; 188 (94%) of respondents considered this topic very or extremely important (see table below). In descending order, patients rated very or extremely important: psychological well-being/stress 185 (92.5%), physical activity 155 (77.5%), nutrition, eating habits and alcohol 150 (75%), alternative therapies 144 (72%), work activity 144 (72%), environmental pollution 134 (67%), social life 121 (60.5%) and cigarette smoke 119 (59.5%). The topics considered relevant was perceived to be able to influence disease symptoms. Regarding RD prevention, environmental pollution and cigarette smoking were considered the most important topics, while fewer patients believed that research on other topics could help to stop disease progression or to achieve disease healing.RankingTopicNot or quite importantVery or extremely important1Doctor-patient relationship, n (%)12 (6.0)188 (94.0)2Psychological well-being/stress, n (%)15 (7.5)185 (92.5)3Physical activity, n (%)45 (22.5)155 (77.5)4Nutrition/eating habits/alcohol, n (%)50 (25.0)150 (75.0)5Alternative therapies, n (%)56 (28.0)144 (72.0)6Work activity, n (%)56 (28.0)144 (72.0)7Environmental pollution, n (%)66 (33.0)134 (67.0)8Social life, n (%)79 (39.5)121 (60.5)9Cigarette smoke, n (%)81 (40.5)119 (59.5)Conclusion:This survey highlights the relevance of several unmet needs. The holistic approach, in terms of medical consultation and psychological well-being, is considered the most important component able to influence disease perception. By capturing patient opinions on non-pharmacological topics for clinical research, this survey indicates that the active patient involvement is essential to design successful translational studies and improve clinical outcomes.Acknowledgments:We thank the Lombard Association of Rheumatic Diseases (ALOMAR) for its contribution to plan and disseminate the survey and the group that sustain systemic sclerosis (GILS).Disclosure of Interests:Francesca Ingegnoli: None declared, Tommaso Schioppo: None declared, Tania Ubiali: None declared, Silvia Ostuzzi: None declared, Massimiliano Buoli: None declared, Valentina Bollati: None declared, Roberto Caporali Consultant of: AbbVie; Gilead Sciences, Inc.; Lilly; Merck Sharp & Dohme; Celgene; Bristol-Myers Squibb; Pfizer; UCB, Speakers bureau: Abbvie; Bristol-Myers Squibb; Celgene; Lilly; Gilead Sciences, Inc; MSD; Pfizer; Roche; UCB

scholarly journals Psychological Effects of Coronavirus Disease 2019 on Students

2021 ◽  
Vol 7 (1) ◽  
pp. 21-29
Author(s):  
Sreeja R. Kuppam ◽  
Keyword(s):  
Mental Health ◽  
High School Students ◽  
Social Life ◽  
Online Survey ◽  
Well Being ◽  
Social Needs ◽  
Psychological Effects ◽  
School Students ◽  
Verbal Form ◽  
Fear And Anxiety

Background This qualitative study investigated the psychological effects on 21 U.S. high school students during the coronavirus disease 2019 (COVID-19) pandemic. Aim The study aimed to identify and assess the pandemic’s effect on the mental health of these students. Method To determine the stress and anxiety students faced during the pandemic, an online survey used five open-ended questions that focused on awareness of the pandemic surrounding the major themes of insight, stress, anxiety, social support, and adapted coping strategies. NVivo software analyzed the raw data. Colaizzi’s descriptive phenomenological analysis method converted the quantitative results into a visual/verbal form. Based on the analysis, the researcher identified the pandemic’s effects on students’ mental health and well-being. Results All 21 participants responded to each of the five questions. Of the participants, 72% demonstrated a negative outlook on their future. Seventy percent (70%) of the participants felt that COVID-19 hurt their social life because of safety precautions, such as social distancing. Even though schools and their faculty tried to keep students engaged and active, 64% of the participants found it challenging to be physically distanced from friends and teachers while learning from home. Of the students, 62% worried about missing out on sports and activities canceled due to the pandemic. 63.14% of the students felt the pandemic stressed them to the point that fear and anxiety overwhelmed them with many questions about the future. Conclusion This study’s results may help create programs that better meet students’ mental and social needs.

Comfort and Convenience: Temporality and Practice

2012 ◽  
Author(s):  
Elizabeth Shove
Keyword(s):  
Consumer Culture ◽  
Social Life ◽  
Temporal Order ◽  
Daily Life ◽  
Well Being ◽  
Global Scale ◽  
Resource Consumption ◽  
Time Space ◽  
Changing Patterns

Despite being embedded in the practices and discourses of daily life, comfort and convenience are not terms around which theories and studies of consumption have traditionally revolved. Over the last decade or so, the tides of intellectual fashion have begun to turn, bringing the mundane into view and highlighting previously invisible dimensions of consumer culture. In reviewing changing interpretations of comfort and convenience, this article captures some of the processes through which the contours of social life are simultaneously sustained and transformed. It also examines how interpretations of comfort and convenience come to be as they are today, and in understanding the types of consumption and demand they entail. This more substantive angle is important in that contemporary definitions of physical well-being and temporal order imply and rely upon forms of resource consumption which are unsustainable in the longer run or on a global scale. The article concludes by considering time and timing, convenience and compromise, convenience and the time–space profiles of practice, and changing patterns of consumption in relation to comfort and convenience.

scholarly journals Response to the COVID-19 Outbreak in Urban Settings in China

2020 ◽  
Author(s):  
Zhao Ni ◽  
Eli R. Lebowitz ◽  
Zhijie Zou ◽  
Honghong Wang ◽  
Huaping Liu ◽  
...  
Keyword(s):  
Urban Communities ◽  
Social Life ◽  
Online Survey ◽  
Perceived Health ◽  
Well Being ◽  
Urban Residents ◽  
Perceived Health Status ◽  
Screening Criteria ◽  
The Social ◽  
The Impact

Abstract The COVID-19 outbreak in China was devastating, and spread throughout the country before being contained. Stringent physical distancing recommendations and shelter-in-place were first introduced in the hardest-hit provinces, and by March, these recommendations were uniform throughout the country. In the presence of an evolving and deadly pandemic, we sought to investigate the impact of this pandemic on individual well-being and prevention practices among Chinese urban residents. From March 2-11, 2020, 4,607 individuals were recruited from 11 provinces with varying numbers of COVID-19 casers using the social networking app WeChat to complete a brief, anonymous, online survey. The analytical sample was restricted to 2,551 urban residents. Standardized scales measured generalized anxiety disorder (GAD), the primary outcome. Multiple logistic regression was conducted to identify correlates of GAD alongside assessment of community practices in response to the COVID-19 pandemic. We found that during the COVID-19 pandemic, recommended public health practices significantly (p<0.001) increased, including wearing facial mask, practicing physical distancing, handwashing, decreased public spitting, and going outside in urban communities. Overall, 40.3% of participants met screening criteria for GAD and 49.3%, 62.6%, and 55.4% reported that their work, social life, and family life were interrupted by anxious feelings, respectively. Independent correlates of having anxiety symptoms included being a healthcare provider (aOR=1.58, p<0.01), living in regions with a higher density of COVID-19 cases (aOR=2.13, p<0.01), having completed college (aOR=1.38, p=0.03), meeting screening criteria for depression (aOR=6.03, p<0.01) and poorer perceived health status (aOR=1.54, p<0.01). COVID-19 had a profound impact on the health of urban dwellers throughout China. Not only did they markedly increase their self- and community-protective behaviors, but they also experienced high levels of anxiety associated with a heightened vulnerability like depression, having poor perceived health, and the potential of increased exposure to COVID-19 such as living closer to the epicenter of the pandemic.

scholarly journals Influências da sobrecarga no cônjuge do cuidador do idoso fragilizado

2018 ◽  
Vol 12 (3) ◽  
pp. 658
Author(s):  
Hayzza Juliana Lopes Velasco ◽  
Rafaely De Cassia Nogueira Sanches ◽  
Cremilde Aparecida Trindade Radovanovic ◽  
Ligia Carreira ◽  
Maria Aparecida Salci
Keyword(s):  
Frail Elderly ◽  
Social Life ◽  
Daily Life ◽  
Family Relations ◽  
Leisure Activities ◽  
Well Being ◽  
The Elderly ◽  
Family Roles ◽  
Individual Interviews ◽  
The Family

RESUMOObjetivo: investigar as influências da sobrecarga no cônjuge do cuidador do idoso fragilizado. Método: estudo qualitativo, realizado com dez cônjuges de cuidadores de idosos fragilizados, por meio de entrevistas abertas e individuais no domicílio. A análise dos dados foi subsidiada pela técnica de Análise de Conteúdo, na modalidade Análise Temática. Resultados: identificaram-se diversas alterações no cotidiano familiar, com destaque para a perda da liberdade, que provocou alterações na vida social, com interrupções das atividades de lazer; alterações nos relacionamentos conjugal e com os filhos compreendidas pela falta de atenção que o cuidador do idoso consegue dispensar a essas pessoas no dia a dia da vida em família e apontamentos a aspectos negativos e positivos dessa relação. Conclusão: mesmo com todas as mudanças ocorridas na organização familiar, os cônjuges conseguiram promover um realinhamento dos papéis familiares para o bem-estar de todos os integrantes da família. Descritores: Saúde do Idoso; Envelhecimento; Família; Relações Familiares; Cuidadores; Cônjuges. ABSTRACT Objective: to investigate the influence of overload on the caregiver's spouse of the frail elderly. Method: a qualitative study, carried out with ten spouses of caregivers of frail elderly, through open and individual interviews at home. The analysis of the data was subsidized by the technique of Content Analysis, in the modality Thematic Analysis. Results: several changes were identified in family daily life, especially the loss of freedom, which caused alterations in social life, with interruptions of leisure activities; changes in marital and child relationships understood by the lack of attention that the elderly caregiver can give to these people in the daily life of the family and notes to the negative and positive aspects of this relationship. Conclusion: even with all the changes that occurred in the family organization, the spouses were able to promote a realignment of family roles for the well-being of all family members. Descriptors: Health for the Elderly; Aging; Family; Family Relations; Caregivers; Spouses.RESUMEN Objetivo: investigar las influencias de la sobrecarga en el cónyuge del cuidador del anciano fragilizado. Método: estudio cualitativo, realizado con diez cónyuges de cuidadores de ancianos fragilizados, por medio de entrevistas abiertas e individuales en el domicilio. El análisis de los datos fue subsidiada por la técnica de Análisis de Contenido en la modalidad Análisis Temático. Resultados: se identificaron diversas alteraciones en el cotidiano familiar, con destaque para la pérdida de la libertad, que provocó alteraciones en la vida social, con interrupciones de las actividades de ocio; cambios en las relaciones conyugales y con los hijos, comprendidas por la falta de atención que el cuidador del anciano logra dispensar a esas personas en el día a día de la vida en familia; y, apuntes a aspectos negativos y positivos de esa relación. Conclusión: incluso con todos los cambios ocurridos en la organización familiar, los cónyuges lograron promover un realineamiento de los papeles familiares, para el bienestar de todos los integrantes de la familia. Descriptores: Salud del Anciano; Envejecimiento; Familia; Relaciones Familiares; Cuidadores; Esposo.

scholarly journals Daily Cognitive Difficulties and Social Experiences Among Older Adults

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 697-697
Author(s):  
Ruixue Zhaoyang ◽  
Jacqueline Mogle ◽  
Karra Harrington ◽  
Martin Sliwinski
Keyword(s):  
Older Adults ◽  
Social Interactions ◽  
Social Engagement ◽  
Social Life ◽  
Multilevel Models ◽  
Daily Life ◽  
Well Being ◽  
Social Experiences ◽  
Community Dwelling ◽  
Cognitive Difficulties

Abstract Self-reported cognitive difficulties are common in older adults and may be an early indicator of future cognitive decline or dementia. In past retrospective reports, cognitive difficulties have been linked with differences in social engagement or social relationships among older adults. However, little is known about how self-reported cognitive difficulties in daily life, such as memory lapses, relate to older adults’ daily social experiences. This study examined how self-reported cognitive difficulties were related to older adults’ daily social interactions and loneliness. Data were drawn from 312 community-dwelling older adults (aged 70 to 90 years) who reported their social interactions and loneliness throughout the day (five times) as well as cognitive difficulties (e.g., memory lapses, problems with attention) at the end of each day for 14 days. Multilevel models revealed that participants reported fewer memory lapses on days when they reported more frequent interactions with family members (p=.041). Higher levels of disruptions to daily activities caused by cognitive difficulties, in turn, predicted higher levels of loneliness the next day (p=.006), but not changes in social interactions the next day. At the between-person level, more memory lapses in daily life were associated with less frequent social interactions with friends, but more frequent unpleasant social interactions and higher levels of loneliness on average. These results suggest that older adults’ self-reported cognitive difficulties were dynamically associated with their social interactions and loneliness at the daily level and played an important role in older adults’ social life and well-being.

scholarly journals The Impact of Social Support on Students’ Behavior in the Context of Iraqi Medical Education

2021 ◽  
Vol 9 (E) ◽  
pp. 1553-1559
Author(s):  
I. D. Al-Hasani ◽  
H. S. Salih ◽  
A. T. Abdul Wahid ◽  
Mohammed Jabarah
Keyword(s):  
Mental Health ◽  
Social Support ◽  
Medical Students ◽  
Social Life ◽  
Online Survey ◽  
Mental Health Problems ◽  
Well Being ◽  
Depression And Anxiety ◽  
Cross Sectional ◽  
The Impact

BACKGROUND: Mental health problems are reflected and linked to human behavior in many aspects. Medical students are susceptible to a wide variety of events that compromise their mental well-being, social life as well as their academic achievements. AIM: This study aimed to find the impact of social support on medical students’ behavior in Iraq via assessing their depression, anxiety, and stress status. METHODS: A cross-sectional online survey-based study targeted all medical students in Iraq. The employed questionnaires covered mental health status of participants by evaluating their perceptions of depression, anxiety, and stress using. Data were analyzed using the Statistical Analysis System. RESULTS: The study revealed a significant influence of social support on students’ perceptions of depression and anxiety, but not of their perception of stress. CONCLUSION: Lending social support to medical student is crucial to improve their depression and anxiety with all the positive results that the support brings to their behavior and social life. However, they need more than the social support to keep them safe from academic and daily life stressors.

Sign in / Sign up

Export Citation Format

Share Document